Irish Examiner - Feelgood - - Health - Rory Tal­lon, CF Pa­tient Ad­vo­cate with Cys­tic Fi­bro­sis Ire­land (CFI).

6.30am Morn­ings are busy. Hav­ing CF means ad­her­ing to a strict regime: chest clear­ance phys­io­ther­apy, in­halers, vi­ta­mins, neb­u­lis­ers and medicines. I also have di­a­betes, so I must man­age my blood sugar. 7.30am I get the kids up. Flo­rence, five, at­tends the lo­cal Gaelscoil in Tyrrel­stown and Áine, four, goes to naíonra. My wife Sarah leaves early so I do the drop-offs. 9am Back at home, I read emails and an­swer queries from peo­ple with CF and fam­i­lies. Many are travel-re­lated. It can be hard to get travel in­sur­ance but it’s im­por­tant to have a com­pre­hen­sive pol­icy when trav­el­ling abroad, as well as hav­ing a Euro­pean Health In­sur­ance Card. We ad­vise peo­ple on op­tions and prac­ti­cal travel tips such as bring­ing medicines and ap­pli­ances as carry-on lug­gage when fly­ing. 10am I fol­low-up with a par­ent ask­ing how to en­sure their child takes sup­ple­men­tal en­zymes with meals at school. Most peo­ple with CF need to take en­zymes with meals to aid di­ges­tion. Older chil­dren can get self-con­scious about this, and par­ents ring look­ing for advice. 11am I re­spond to a query about coun­selling. Peo­ple with CF have ac­cess to a psy­chol­o­gist at hospi­tal CF cen­tres but some­times they would like ex­ter­nal sup­port and we pro­vide grants for this. 1pm I head to our Rath­mines of­fice. We did a sur­vey on in­de­pen­dent liv­ing with CF and are fi­nal­is­ing the re­port. It ex­am­ined as­pects of liv­ing from ed­u­ca­tion, em­ploy­ment, hous­ing and so­cial wel­fare sup­ports to travel and mo­bil­ity re­quire­ments. Peo­ple with CF don’t qual­ify for mo­tor­ing as­sis­tance even though pub­lic trans­port poses a risk of cross-in­fec­tion, can be too dif­fi­cult to ac­cess or un­avail­able in a lo­cal­ity. 4pm I meet the fundrais­ing team to dis­cuss the lo­gis­tics of our na­tional aware­ness day, 65 Roses Day, on April 13. Peo­ple can sup­port us by buy­ing a pur­ple rose for €2 in par­tic­i­pat­ing shop­ping cen­tres and Spar stores or do­nat­ing on­line at cfire­ 5pm I head home. Down­time in­cludes a run­ning class at the Na­tional In­door Arena. It’s very im­por­tant with CF to keep your lungs work­ing and your body as strong and fit as you are able.

“Hav­ing CF means ad­her­ing to a strict regime”

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